We are taking a five-day trip to Hawaii next week and have started to get ready. As I am packing, I realize that there are things that we use on a daily basis that have become essential components to my husband’s care that won’t be coming with us. This means that I need to be prepared to step back and remember what we were doing before we found these tools and take those things along. It’s going to take some thought.

One of the biggest things that won’t be accompanying us is our bidet toilet seat. We have both come to depend on that and, unfortunately, the hotel we are staying in won’t have one. Personal hygiene will be challenging and so I am packing some additional aids such as wet wipes. Another tool we won’t have with us is furniture that accommodates his challenges. Our couch sits higher, our bed has an adjustable base, our shower has a low threshold. I will need to be more alert and ready to help when the need arises.

The change in location itself is going to be a challenge. There will be a time difference to negotiate with medication schedules, there will be a relatively long flight and time spent in the airport. Meals will be off schedule and life will be a bit chaotic. I have no plans for anything on either the day we arrive at our destination nor the day after we return knowing that it will take my husband at least that long to recover from the flights.

There is nothing I can take with me to ease this other than a sense of calm myself. I need to be positive and know that the trip will be what it will be. We can do this, I can do this, and we will both be thankful we did once we are sitting on the beach in the warm Hawaiian sun.

My husband needed a new pair of shoes. We knew the importance of good shoes that provide a stable base and support his balance. His old shoes had soles that allowed his foot to rock through each step, making him feel even more unbalanced. He felt he needed something flat on the bottom so when he is trying to get up from a chair, he has a solid foundation. He can still tie his shoes and it is good exercise for his fingers, so he didn’t need to look at slip-ons or Velcro closures.

I turned to Google for help and found that there are many different approaches to appropriate shoes for Parkinson’s Disease. Most of them look at the challenges associated with putting them on but there are also a few that look at balance and stability. I found one study done in 2013 that addresses the soles and suggests that textured soles might help with postural stability. Another website touted insoles that stimulate the bottom of the foot when walking to encourage balance and a better gait. The internet agreed with my husband that the sole needs to be flat on the bottom; contoured heels can decrease stability, especially when getting out of a chair. Finally, the toebox, as it’s called, must be big enough to accommodate my husband’s toes when they sometimes choose to cramp. It’s a lot to look for in a shoe.

There aren’t many specialty shoe stores in our community and, even though I saw some nice examples, I wasn’t ready to order shoes on-line. I tried that once before and learned that he really needs to try the shoe on to make sure the fit is good. We went to a local shop and found some Dr. Scholl’s that have the flat soul, a cushy and supportive insole and are wide enough for his toes to move. He tried them on and then tried doing a sit to stand in the store before we left, it all seems to work. The new shoes are very lightweight which is another bonus. He is a bit clunky in them as he adjusts to the change, but I think they are going to be okay and give him a greater sense of safety and stability and me the knowledge that he is less likely to fall.

For a look at the science behind this check out Effect of Foot Orthoses and Shoes in Parkinson’s Disease Patients: A PRISMA Systematic Review – PMC (nih.gov) on the National Institute of Health website.

I am making puff pastry today. I have never made it from scratch before and was convinced that I couldn’t. Why else would they sell it in the store unless it is too difficult for home cooks? I turned to my trusty friends at google and found a recipe. After getting flour all over my counters and floors and a good solid workout for my rolling pin and arms, the pastry is now in my fridge just waiting to be baked. It was not only possible; it actually was quite easy.

What on earth does this all have to do with my role as a CarePartner for my husband? I am often running into tasks that I never thought I would be asked to do. Whether it is something like nail care for him or cleaning gutters on the house, these are things that I knew were beyond my capabilities. I would put them off as long as I could until that wasn’t an option anymore. Surprisingly, when I finally get started, I find that most tasks are less difficult than I expected. When I finally decide to give it a try, I am able to get many things done that seemed impossible.

My capabilities are being challenged on a daily basis and I am learning that I am up to the challenges. When a new task comes along, I can choose to brood over it and worry about it which just makes it bigger, or I can go ahead and give it a try. More often than not I find that the task gets done and I can move on to the next one. Once in a while I will run into things that are beyond me. Then I reach out to someone for help knowing that I have given it my best. That’s something I would never have known if I hadn’t first gotten started.

My husband’s speech has been impacted by his disease so when we’re out in public he shuts down, looking to me to interact with salespeople, waitstaff, anyone we encounter. When he is forced to speak, he looks to me to translate his words. I become his buffer to the outside world. I want him to be comfortable, so I step in and take over whatever conversation or transaction we are in. But is it really in our best interest? We both know he can still communicate, he does it all the time at home. Wouldn’t it be better if, instead of my stepping in, he actually tried more and gave people the opportunity to respond to him? He’s neither deaf nor mute, he has Parkinson’s Disease. Perhaps we need to give other people more chances to see what that actually looks like.

This is especially important when it is with friends and family. Even his own children are now turning to me more than him. They may still text him on occasion but when we are together, I get to do all the talking while their dad sits and watches. I have spoken with him about this and tried to put him in situations where he had to participate, but it doesn’t always work. I worry that they are losing their personal connection.

We are meeting with friends, people from outside our PD network, for dinner tonight. Some of these people have known us for years and are familiar with my husband’s diagnosis, some will be new. It will once again fall to me to draw him into conversations or to work on getting him involved in the activities. There have been times when I spend so much time trying to make sure he is engaged; I miss out on things myself. This evening, however, it might be time to try stepping back a bit. I think I’ll leave the buffer at home and see what happens.

It happened just the other day, I was suffering from abdominal pains all night, got very little sleep and was definitely under the weather. I don’t like to say that I am sick, as a CarePartner I don’t have time for that, but this time I couldn’t deny it. I was in no shape to care for my husband and barely had the strength to care for myself. I spent half the day in bed and the rest doing as little as possible. It was not a good day for either of us. Thankfully, I have a back-up plan and a solid support network.

My plan starts and ends with the basics. I always stock a few microwavable meals in our freezer as well as keeping a supply of fresh fruits and vegetables around. My husband may not cook anymore but he can still manage the microwave which means he was able to prepare food without my assistance. They may not have been the healthiest of meals but it kept us both going. We discussed the rest of his day and decided he could participate in his Zoom exercise class on his own. I would be close by in case things went haywire, but he was feeling good about being able to do it and would be mindful not to take extra risks.

I had outside obligations, it was the one day a month when we get together with friends from our Parkinson’s community for breakfast. I coordinate these outings so kind of need to be there. This particular morning, the only place I needed to be was in my bed. Again, thankfully, I have a solid PD network. I was able to make one call and a friend stepped in to cover the breakfast for me. It is not part of a set plan, but it worked.

So, I took a sick day and the world didn’t end. By the next day, I was starting to feel some better and was able to do most things. This was a great reminder that it is better to listen to my body than fight with it sometimes. When my body decided I was sick, my husband stepped up, my friend stepped in and I was able to step back for a while. I think my back-up plan just got a new name. From now on it’s my step back plan and it seems to work pretty well.

When my husband needs something, I am right on top of it whether it means a trip to the pharmacy or a call to a member of his medical team. I know my duty to him and take care of it in a timely manner. I don’t stop searching until a resolution is found, whatever the issue may be. If only I could be as proactive when it comes to caring for myself. Instead, my tendency is to ignore or stuff things away with the hope that they will eventually solve themselves. What happens all too often is that rather than fix themselves the issues grow bigger and more complicated to resolve.

There are times when simply talking about a need with others, with no clear intention on my part, can help me find clarity and solutions. I don’t ask for help; I simply mention that I am having a problem and the discussion often leads me in a new direction. Verbalizing a problem doesn’t make it go away, but it does help me better understand where it comes from and often provides insight on different ways to approach it. Defining the issue and potential resolutions out loud makes it all real and suddenly it becomes something I can tackle.

I am looking for a counselor for myself. I put it out there to my support group and they came back with several thoughts and even a couple of names. Everyone was understanding about the challenges we face, and several shared their own stories of therapy. One friend mentioned a book she is reading that is helping her on her journey. I am looking into it as a stopgap until I can find a human to speak with. It is becoming a struggle to find the help I need, but I won’t give up. I am prioritizing myself this time and won’t stop until I get resolution.

The book I refer to is entitled “Women Rowing North, Navigating Life’s Currents and Flourishing as We Age” and was written by Mary Pipher, a Clinical Psychologist. I am reading it because I want to flourish, don’t you?

There is always enough going wrong in my day, so I have decided to look for what is going right instead. If I can find things that are going well, even during difficult times, it keeps me moving forward. It would be easy to focus on what is going wrong but then I would just want to sit down and cry and what good would that do? Instead, I think I’ll look for the positive opportunity hidden in the challenge and see if I can’t turn it all around.

An example is the other day when I forgot to do the laundry. Unfortunately, the next day I was feeling under the weather and the laundry still didn’t get done. By the time I finally got to it, we had four loads instead of the two I had planned for and it took most of the day. It was an overwhelming task that got in the way of the other things I needed to be doing. I have to admit that I did spend a few minutes kicking myself for letting it pile up on me but then just took it on and got it done.

Instead of focusing on what was wrong, having to do the laundry, I decided to look at it as found time and did some reading while waiting for the loads to finish. I let go of other worries and the day actually became quite restful. Things got even better when my husband, after watching me work so hard on the laundry all day, decided we needed to go out to dinner. Things going wrong turned into things going very right that day!

I learned a new word recently, it’s thermodysregulation. It’s a medical term that refers to a symptom, or really a group of symptoms, that come with my husband’s diagnosis of Parkinson’s Disease. I started looking into this when I noticed that no matter how hard he worked out, my husband didn’t sweat. I was assuming that he wasn’t working hard enough because I was working out right alongside him and I was sweating like crazy. Instead of continuing to push him to work harder, I decided to see if there might be another reason.

It turns out that one of the challenges of Parkinson’s Disease is thermodysregulation. His body loses the ability to regulate internal temperatures which is what keeps my husband from sweating. His autoimmune nervous system in not functioning properly to activate his sweat glands. The funny thing about this disfunction is that while it keeps my husband from sweating, it can also cause other People with PD to sweat profusely by overstimulating those same glands. It can under or overstimulate the system depending on the person and their physical makeup.

Thermodysregulation is also why he is intolerant to hot weather, again because his sweat glands and other internal regulators aren’t acting like they should so he easily overheats. Inversely, he is very sensitive to cold weather as his body doesn’t work to conserve heat or warm him either. He’s the one putting on sweaters when it’s 70 degrees out and bumping up the thermostat in the house. At least he can’t blame that on me anymore.

See PD Can Result In Heat Intolerance – Parkinson’s News Today (parkinsonsnewstoday.com) for more.

As I get older, I find that I actually enjoy sitting in the sun more. It feels good on my bones and relaxes my muscles. But it also is drying out my body and my older body is not as good at rehydrating itself. My glands don’t secrete as much sweat and my heart doesn’t pump as well as it once did which slows down the flow of blood and makes my body hold on to more heat than I did when I was 20 years younger. The reality is that almost 10,000 seniors die every year from heat related causes. For more on these factors see The Effects of Heat on Older Adults | Harvard Medicine magazine.

We are currently in the fourth or fifth heat wave of this summer and hopefully the last. The temperatures outside are climbing into the nineties which means we are staying indoors where we have air conditioning. What I learned recently was that it doesn’t have to be this hot to be considered dangerous, many people actually recommend taking care when temps reach 80 degrees. I found some great tips regarding how to deal with the heat at Tip Sheet: Hot Weather Safety Tips for Older Adults | HealthInAging.org.

 Things are even more difficult for my husband thanks to his diagnosis of Parkinson’s Disease. Sitting in the sun is not an option as higher temperatures exacerbate his Parkinson’s symptoms. The disease slows down all his physical processes and restricts his ability to cool himself. Heat intolerance is not uncommon as more than 60% of People with PD have something called thermodysregulation, a malfunction within their autonomic nervous system. Add the fact that his medications make him more susceptible to sunburn and it is no wonder he prefers to spend his summer days inside.

Check Friday’s blog for more on this condition called Thermodysregulation.

This is so much easier said than done for me. My husband exercises 6 days a week, that’s an hour of scheduled activity for both of us in the middle of every day. He always needs a nap either before or after, another hour and a half gone. By the time we are done with this, our day is pretty much full. We may have an hour or two free but taking an entire day? Not a chance. We have one day when he doesn’t exercise, yet we still never seem to find time to do fun things. Just because we aren’t exercising, we still have regularly scheduled meals and a nap. PD delegates how we spend our time and there isn’t much room for slack.

If we can’t take a day off together, then do I try to take one off by myself? What would that look like? When I was working, I called them stress relief days, not necessarily an option for a CarePartner. I have friends who have chosen to use respite care for a break. That involves longer term, full-time stays apart and I don’t feel that I need that, I just need a day. One day when I could come and go as I pleased. No meals to prepare, no exercise class, no animals to care for, no house or yardwork. A free day without any responsibilities. I’m not sure that I would do much different, but it would be so nice to have the choice.

How can I make this happen? First of all, I need to ask for it. I need to let my husband know that I need some time for myself and then work with him to figure out a plan. Second of all, I need to accept that I can let go, I don’t have to do it all. My husband is still capable of caring for himself as evidenced by the fact that I am gone for a few hours to volunteer every week. If we can make that work, we should be able to shift it to a day when I am free to do personal tasks or even nothing at all. The third step is to find a day when he is feeling good and simply give it a try. A day of uninterrupted nothing, if that is what I choose. Living in the uncertain world of Parkinson’s Disease, I wonder if this is actually possible?